Rare Disease Day, I Have Ramsay Hunt Syndrome
I am rare. 😉
I am one of 5 out of 100,000 people a year who has been diagnosed with Ramsay Hunt Syndrome.
My journey began the week of March 18th, 2013. 10 years ago.
It started with vertigo. I immediately went to urgent care. Then my face "broke." Half of my face was paralyzed. I was able to see an ophthalmologist the following day. He ruled out a stroke and thought it was Bell's palsy. However, based on additional symptoms, he suggested that I see a neurologist.
The neurologist diagnosed not only Bell's palsy but Ramsay Hunt Syndrome, too. Both cause facial paralysis.
Two rare disorders.
25-35 per 100,000 people in the United States are affected by Bell’s palsy. About 40,000 individuals are diagnosed with Bell’s palsy in the U.S. each year.
Both cause half of your face to become paralyzed. Ramsay Hunt could cause hearing loss and damage your equilibrium. I have both issues. It's sometimes called "shingles of the ear." It causes nerve damage on the affected side of your face. Sometimes your face doesn't completely recover. I've been lucky with about 90% recovery.
Justin Bieber was diagnosed with it last year and had to cancel his concerts for a couple of months. He helped raise the profile and awareness of this disease.
It's caused by the virus that causes chickenpox in children and shingles in adults. It's reactivated and spread to the facial nerves. It's not clear what causes Ramsay Hunt Syndrome.
I saw a Nose, Ear, and Throat doctor, and an audiologist, I had an MRI and countless neurologist visits. I couldn't drive for 3 months. I had to cancel a public speaking event for the first time. I had to cancel my regular television safety segments. Life came to a standstill.
That year I was president of a non-profit organization I belonged to for years. I eventually had to go out in public. I couldn't walk on my own. I had to deal with stares over my face, because no matter how hard I tried, I couldn't make half of it move and I couldn't cover it up.
Today is #RareDiseaseDay. According to the National Organization for Rare Disorders (NORD®) "Diagnostic Odyssey” is a problem. Many have a hard time getting an accurate diagnosis.
I was lucky. I sought medical attention immediately after experiencing symptoms. With Ramsay Hunt Syndrome, the longer you wait, the more damage is done and it becomes less likely for your face to make a full recovery. I had wonderful and knowledgeable doctors.
I still cannot walk a straight line because of my balance issue. I see the "broken" side of my face on camera, which is an integral part of my business. I feel the nerves in my face every time I talk, often to large audiences virtually and in person.
But, I carry on. I don't have a choice. I am healthy. Last fall was the first time I met someone else with the same disease. It was good talking to someone who could relate to the odd things our bodies were doing. I wasn't alone.
Reach out to other people who have your disorder. Talking about it with someone who can truly understand helps. I realized what I experienced and continue to experience isn't in my head and that I wasn't alone.
If you have a medical issue, please get medical help without delay.
Seek knowledgeable resources for help and don't rely on a "Google diagnosis."
Finally, non-profits like the National Organization for Rare Disorders, Inc. (NORD) ® is an excellent resource for those with rare diseases. Please reach out to them for answers, accurate information, and resources. Also, consider sharing your story in case someone needs to hear it.
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https://rarediseases.org/rare-diseases/ramsay-hunt-syndrome/
#RareDiseaseDay #RareDiseases #ShareYourColours #LightUpForRare #Awareness #Advocate #Rare #RoleModel #Story #Community
